Now that letter can be found. Children’s National Medical Center started The Parent’s Letter Project. The idea being that sometimes the only way to be sure you are making the right decision about something important is to get a little advice from someone who has been through the same thing. There are letters about everything from infectious diseases to premature birth, to cancer. On the website you can read letters from parents who have already faced what you are facing. There are even a few video letters to watch!

The Parent’s Letter Project is a great resource. You can find letters from parents that are in your shoes, are a few steps ahead of you, or have completed the journey. Visit the project’s website and read some of the letters, or maybe write your own.

Did you know that, according to America’s Health Insurance Plans Research, the majority of claims are “electronically adjudicated?” This means claims are processed electronically, with no manual intervention, using denial algorithms. A lot of times your claim may simply need to be coded differently or looked at a second time.

If your insurance company denies your claim the first thing you need to do is check your policy documents to see what is and what is not covered, how long you have to appeal, and how the appeals process works. Take the time to read your decision letter and be sure you understand why your claim was denied. If there is any part of the denial or appeals procedure that you are unsure of, do not hesitate to call your insurer and ask them to explain it to you- that is your right as a policy holder.

Once you are confident that the treatment, procedure, or test should have been covered, it is time to file your appeal. Ask your doctor to support you by writing a letter justifying what has been done or what was requested. Re-submit this letter along with a copy of the denial letter and any other written information that supports the use of the treatment that has been denied.

When your child has cancer, especially a rare form, it is possible to run into a denial based on the treatment being “experimental.” In these cases you should ask your doctor for help. If your provider can give the insurance company proof that literature supports the use of a treatment, then it is technically not experimental. Getting peer-reviewed studies, letters, or reports from other doctors that are using the same protocol can go a long way in getting the treatment covered as well.

Claims that are intially denied are often paid after a formal review. If your insurer still denies the claim you can request that their decision be reviewed by outside cancer experts. All but five states, Alabama, Mississippi, Nebraska, South Dakota, and Wyoming, allow these external review boards. As a final option you can contact an attorney if you and your doctor believe the claim justified. The Patient Advocate Foundation also offers assistance with insurance related issues and they offer their services to seriously ill patients for free.

Organization is very important when dealing with insurance companies. Be sure to keep a copy of every letter you receive or send. It is also helpful to make a note of the name of the representative, date, and time whenever you speak with your insurer on the phone. You can keep all of these documents in a special section of your Cancer Binder, like Cassie and Lindsay recommend in their article.

Do not give up just because you get denied. Get familiar with your insurance policy, talk to your care team, and seek advice from parents that have been there before. If you have adequate medical support for your claim, and use all the resources available to you, you stand a good chance of getting your claim paid.

1. Expect The Unexpected – There will be unexpected hospital admissions.  Keep a suitcase packed with extra clothes and travel toiletries stashed in your car at all times.  Other things to keep in the car: Extra towels, chemo gloves, sanitizer wipes, wet wipes, and a sick bucket or bags.  Also, a wet/dry bag like this one can be a real life saver.  You keep a dry change of clothes in the dry pocket, and can store soiled ones in the water-proof pocket without fear of leaks or stink.

2.  Be a Good Historian - 
a.)  Keep a concise, up-to-date medical history and medicine list.  Put your child’s name, date of birth, diagnosis and date of diagnosis, and allergies at the top.  Include current medications including dosages and frequencies, previous surgeries and the name of the surgeons, as well as previous admissions… and don’t forget the dates!  It will come in super-handy when you’re tired of answering the same questions over and over and medical staff will be tickled pink when you present them with a nice clean and accurate medical history.  (I always keep several copies in a folder in my bag!)  
b.)  Create a “Cancer Binder.”  Ask for copies of everything and organize them in here.  Keep copies of consents, scan reports, labs, relevant articles, etc.  You can also print a calendars from calendarsthatwork.com to help you keep track of dates and appointments. 
**Try to commit your child’s medications to memory and make a point to verify what your child is being given whenever they are in the hospital.**

3. Be the Best Bookkeeper – If you don’t have some sort of filing system in your home it’s time to get one!  It’s important to keep files of all medical bills and receipts in case you ever need to dispute something.  It’s a good idea to match up hospital bills with their corresponding EOB’s (explanation of benefits) that you receive from your insurance company.

4. Know Who to Call – Save important phone numbers in your cell phone: Clinic, the hospital operator, the oncology floor, nurse practitioners, etc.  It will save time rather than searching for a list or business card.  And don’t be afraid to call if you have a question or concern – it’s their job to be there for you!

But the biggest tip we can offer you is this:  Pay attention and ask questions! If you don’t understand, ask again! To advocate for your child you need to understand what is going on and why.  Be educated about your child’s condition and treatment!

Big thanks to Sam’s mom, Cassie Sartin, and Jackson’s mom, Lindsay Markert for this wonderful list! Visit their blogs for more words of wisdom and updates on the boys.

Isaiah Gamble

September 14, 2010 was the beginning of the last round of chemotherapy for my son Isaiah. Isaiah was diagnosed with pleuropulmonary blastoma, Type 3 in January 2010. The entire process of finding out one random day, after many healthy days, that your child has a life-threatening illness, and going through round after round of chemotherapy, along with rounds of radiation therapy, is draining to say the least.

I was newly pregnant when my son was diagnosed, and no one understood, but it seemed as if throughout the entire process I was holding my breath. I would count down the rounds of chemo, anxiously waiting for the twelfth and final round. Little did I know that the completion of chemotherapy would be a difficult time for me.

When round twelve of chemotherapy was complete, I suddenly felt all the pain and stress that I had been hiding from my son for the entire year hit my body all at once. I ached from head to toe. I had hidden the pain because I could not let it affect my son who was battling nor the son who was growing inside of me. So after chemo I was able to breathe, momentarily.

Then suddenly it hit me, “What if it comes back?” “What if he has to keep going to the hospital and getting more ouchies?” I found myself being afraid to breathe again. Every day that passes I look at my son and thank God for how far he has come. I pray multiple times daily for his health. I pray that he will grow into a wonderful healthy young man. I pray that he will never have to endure the pain of cancer again.

The entire time my son was being treated, I could rest assured that we were fighting the cancer. Once treatment stopped it frightened me because it felt as if we were no longer fighting. Each day I find myself thinking about the “what if’s”. My son has come so far since last January and the thought of him having to go through anymore pain scares me. I just want him to be able to just be a kid.

In mid-January we were scheduled to visit with our son’s oncologist to discuss the results of his follow-up cat scan. I was worried. You see, my son has to get post chemotherapy check-up scans every three months. The first month and a half were care free and simply wonderful, because we were able to live. We celebrated his 4th birthday, we went to Disney World, we spent Christmas at home as a family, we simply had a great time. Then as we got closer to month three, I began to stress a little. My son got his scans, and then we had an appointment with the doctor in order to receive the results. Quite frankly I was scared out of my mind. I am now realizing that this is the life of a mother of a child who is battling cancer. Every day is battle, either a physical one or a mental one. That day was a mental one for me. I found myself succumbing to the “what if’s”.

Fortunately, today at this exact moment, I am no longer an emotional wreck. Today, I am okay because his scans came back with great results. So today, we will carry on and live. We will live, laugh, and love until we get closer to the next scan, when I know I will once again stress. I will stress because that is what I do as a mother.

The terrible thing about cancer is that it changes your life completely. I think differently now. I worry more, but I also love more. Cancer has broken me, but it has also made me stronger and better. I no longer sweat the small things, and I do my best to live each day as if it’s our last. Today I will read my Bible, and I will be positive. The best advice that I can give is for you to do the same! Make today a good one!

Get more advice from our writer Tomika Gamble.

Holden Underwood

When they finally got to talk to the staff surgeon for pediatric surgery, he told them that the line tip was still in a good place, which they knew from viewing the chest x-ray, but it looked like the cuff was in fact out. In the morning, a fourth doctor indicated that Holden would have to go into surgery. The fifth doctor came to verify that they were not seeing the cuff and decided that Holden did not need surgery.

It apparently took awhile for everything to be settled, but Holden’s parents’ actions are a true example of staying vigilant and being an advocate for your child. To learn more about being an empowered parent, visit our empowerment section and continue to read our articles written by the parents of children with cancer.

Follow Holden on Facebook.

Holden Thomas Underwood was diagnosed with Acute Lymphocytic Leukemia at 6 months of age.

Isaiah Gamble

The month of January was a whirlwind. Our journey with cancer began with an emergency room visit that lead to an ICU visit. We were then faced with a major surgery to remove a rare tumor, a devastating visit with the oncologist to obtain a heart breaking diagnosis, and months of chemotherapy, radiation, and regular visits to the hospital for check-ups and blood work. In the beginning, there was little time to process everything. So much information was being shared and it all seemed to go in one ear and out the other. Looking back, there was much that I wish I had known from the start. Now is my opportunity to share the knowledge that I have gained.

Pray, Pray, and Pray. Then, pray some more

You are about to face possibly one of the biggest challenges of your life. Now is not the time to leave your faith behind. Jeremiah 30:17 says that God will restore your health. You must believe this with all of your heart and know that with God, all things are possible. When you find yourself wavering and getting upset with God, and you will, remember to pray, pray, and pray. This will allow you to find strength in God and His word.

Stay positive

During this challenging time in your family’s life, you must remember to stay positive. No matter what anyone says, you must stay faithful and know that God wants your child to be healed. Keep your thoughts positive and believe with all of heart that all will be well. When you believe, you will receive. (Mark 11:24)

When our battle began, many of our friends provided positive books for us to read. I found these books to be extremely helpful when times got tough. Two books that helped keep me strong when I was struggling were, Stronger than Cancer by Connie Payton and Healed of Cancer by Dodie Osteen. Both are small enough to carry, so you can keep them with you and reference back to them when you need encouragement.

Write everything and remember everything

As a parent dealing with cancer, it is important that you keep a spiral or journal with you at all times, and write everything down. From day one, you will be learning about new terminology, procedures, and medications. When you do not understand something, ask for clarification.

It is crucial that you know your child’s file better than anyone in the hospital. You must be able to recognize when things are right and wrong. Something as simple as when your child should receive a dose of medicine and how much they should receive is essential for a parent to know. Don’t leave anything up to the nurses and doctors. Remember, no matter how good they are, they are still human and humans make mistakes. Know everything and be your child’s greatest advocate.

Research, Research, Research

After diagnosis, it is time to research the illness. You should know everything about the illness, but remember to take care when reading negative statistics. You do not want anything you read to make you lose faith and become negative. A surgeon, whom I admire dearly, once pointed out that it does not matter what statistics say because even if the statistics are great, that does not mean that your child is on the good side of the statistics. You must focus on your child because no child is the same. So in other words, do not allow your mind to become consumed with negative thoughts simply because you come across something negative. God is in control and you must remember that.

Utilize available resources

There are a million resources available to cancer patients and their families. Take time to research these and familiarize yourself with them early. Your social worker should be your best friend because they know about what’s available to help you make this journey as easy as possible.

One major resource that I did not learn about until about six months after the start of chemotherapy was that hospitals have in-house charities to assist families with paying hospital debt. There is also assistance that can be obtained for parking, meals, travels, and so much more. Many of these resources are listed in the binders and manuals that families are provided with at the beginning of care. After the initial devastation sets in, read the manual. It definitely helps.

Keep all medical information

Once a child is diagnosed with cancer, they will have to deal with it for the rest of their lives. It is important that you keep copies of all of your child’s medical records to assist with their care. Even if your child is cancer free, there may come a day when they need to share their medical history. Giving your child that binder will not only tell them their testimony, but will help them understand all that they have gone through.

Hydration is key

Anti-cancer drugs can be extremely hard on the body. You never know what side effects your child will have to the drugs until after they have already received them. One of the drugs given to my child ruined the lining of his bladder, and for two weeks it caused him to bleed and have extreme pain every time he urinated. The cure to this was simply administering his medications differently and hydrating him for at least six hours prior to receiving chemotherapy. Of course there was no way to know that the chemo would affect him the way it did, but what I did learn is that hydration is important.

Keep the norm as much as possible

It is important that you keep your child’s life as close to normal as possible. Of course the term normal will never take on the same meaning as it previously did, but the key is to make sure that you allow your child to still be a kid. Do not burden your child with unnecessary worry and never treat them as if they are sick. If you do, they will be sick. Make sure that you do your best to keep your child active. We would take our son for rides on his IV pole, on the bike, or in the wagon if he was not feeling well. Yes, we were only walking the halls of the cancer floor, but we were staying active.

Our first chemotherapy visit was filled with days of living in our pajamas, sleeping all day, and feeling sad and sick. We finally decided that no matter what, we would set a schedule and keep up normal activities such as eating breakfast, brushing teeth, getting dressed, visiting the play room, doing puzzles, painting, watching movies and bathing. It is easy to get withdrawn while in the hospital. Keep your child busy. It will keep them happy and help them heal.

Ranking was determined by how well the hospital did in medical outcomes such as survivor rate, reputation, and care-related indicators of quality such as the patient-to-nurse ratio and availability of special programs. For cancer patients, survival after stem cell transplant, infection prevention, and volume of new patients were other factors considered in the questioning. Nurses, medical directors, infections specialist, experts, and department chairs were all polled for the survey. Categories were ranked low, medium, high, and highest.

5. Texas Children’s Hospital of Houston, Texas

Texas Children’s pride in family-centered care brought them to “highest” category for parent and family involvement. They also ranked amongst the highest in clinical research, availability of pediatric specialists, and specialized clinics and programs. Texas Children’s got a high mark for nurse-patient ratio as well as bone marrow transplant services, and surgical volume. For stem cell transplant and infection-prevent activities they received a medium ranking, which brought their total to 91.1/100.

4. Cincinnati Children’s Hospital Medical Center

Cincinnati Children’s Hospital Medical Center has a high rate for all patient survival after treatment and was among the highest for preventing infections, advanced clinical services, and parent and family involvement. They ranked a medium for stem cell transplant survival and the number of patient intake but have a good ranking in the number of nurses to assist those patients. Cincinnati Children’s Hospital Medical Center scored 91.8/100.

3. Children’s Hospital Boston

Children’s Hospital Boston is internationally known for specializing in care for children from pre-birth to 21 years of age. They have a very high reputation amongst specialists and take in a large number of new cancer patients. Children’s Hospital Boston has a high stem cell transplant survival and is placed in the highest for bone marrow transplants offered. Their surgical volume is low, but this facility is recognized for patient and family services and the availability of pediatric specialists. Children’s Hospital Boston scored a near perfect 99.6/100.

2. Children’s Hospital of Philadelphia

Children’s Hospital Philadelphia admits a high volume of new cancer patients and retains a high number of nurses for those patients. They fell short with a “medium” in surgical volume, but ranked highest for nearly all categories such as overall survival, infection prevention, clinical services, bone marrow transplant services, and patient and family services and involvement. Children’s Hospital of Philadelphia came in at 99.7/100.

1. St. Jude Children’s Research Hospital in Memphis, Tennessee

St. Jude’s is recognized for their advances in solid tumors, leukemia, and neurobiology and brain tumors. They also have a very strong reputation with specialists. It was the only hospital to simultaneously receive the highest rank for prevention of bloodstream infections, infections prevention activities, and their nurse-to-patient ratio. Despite seeing over 5, 700 patients annually, they scored high for their patient family services and involvement. St. Jude topped it off with 100.0/100.

You can also view other ranked hospitals and their credentials or search for hospitals in your area.

Remember, though based on a survey, this list is subjective. There are many personal factors to think about when it comes to choosing a hospital, so we invite you to share your hospital experiences in the comments below.

Photo by Steve Chilton

Gentle Willow: A Story for Children about Dying by Joyce C. Mills, Cary Pillo (Illustrator)

The Angel with the Golden Glow by Elissa Al-Chokhachy, Ulrike Graf (Illustrator)

Waterbugs and Dragonflies: Explaining Death to Young Children by Doris Stickney, Gloria Ortiz Hernandez (Illustrator)

H is for Hair Fairy: An Alphabet of Encouragement and Insight for Kids (and Kids at Heart!) with Cancer by Kim Martin, Wend Boomhower (Illustrator)

The Next Place by Warren Hanson

When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children by Debbie Duncan, Nina Ollikainen (Illustrator)

Little Tree: A Story for Children With Serious Medical Illness by Joyce C. Mills, Brian Sebern (Illustrator)

Help for the Hard Times, Getting through Loss by Earl Hipp

Helping Teens Work Through Grief by Mary Kelly Perschy

Molly the Pony: A True Story by Pam Kaster

The Making of My Special Hand by Jamee Riggio Heelan, Nicola Simmonds (Illustrator)

Why Charlie Brown, Why?: A Story About What Happens When a Friend is Very Ill by Charles M. Schulz

When Dinosaurs Die: A Guide to Understanding Death by Laurie Kransy Brown and Marc Brown (Illustrator)

Can I Still Kiss You?: Answering Children’s Questions About Cancer by Neil Russell

These websites can be helpful at various stages of the cancer process. Some provide information on beneficial programs for you and your children.

Photo by Marco Giacomuzzi

CancerCare for Kids is part of the free, professional services CancerCare provides, but is focused on the particular needs of children and parents like practical support, education and advice to parents, and counseling to children and teens to help them understand cancer.

CancerSourceKids.com is a secure site where children can learn about cancer in a fun and interactive manner.

Super Sibs supports and recognizes brothers and sisters of children with cancer.

Sunshine Kids provides positive group activities and emotional support for young cancer patients through a variety of programs and events, free of charge, for kids who are receiving cancer treatments in hospitals across North America.

Teens Living with Cancer offers information and resources about cancer, treatments, and support network presented by teens for teens.

2BME offers practical and emotional advice for teens living with cancer such as information on how to care for your skin, hair loss, diet, and coping socially.

CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.

Wigs For Kids is a not-for-profit organization that provides hair replacement solutions for children affected by chemotherapy, alopecia, burns and other medical conditions.

Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis.

Chemo Angels matches patients who are going through the difficult time of chemotherapy with “Angels”, volunteers who bring encouragement with little notes, cards and occasional small gifts.

KIDSAID from GriefNet helps kids contact other kids online to talk, get advice, and share stories about grief. The site is directed by clinical psychologists and grief counselors.

Fernside Online: For Grieving Children has information on how to help a grieving child following the loss of a loved one. Includes a section just for children.

Kidscope helps children understand a parent’s diagnosis and cancer treatment from a child’s point of view.

Photo Gerolf Nikolay

About the cancer

• What kind of cancer does my child have?

• What is the stage and histology of my child’s cancer?

• What is the survival rate for children with my child’s stage of disease and risk assignment?

• Is there anything unique about my child’s cancer that makes their prognosis better or worse?

• How do I get copies of my child’s test results?

• Should I get a second opinion?

About treatment

• What are my child’s treatment options?

• How long is the treatment plan?

• How many children have been treated on this protocol?

• Can you give me a detailed outline and schedule for my child’s treatment plan?

• What is the goal of treatment? To cure the cancer or stop it from growing?

• What are the realistic goals of this treatment?

• How and when will I be able to tell if treatment is working?

• Has my child’s cancer metastasized? To what extent?

• What is the difference between a central line and a portacath? What is the best option for my child?

• How often will my child’s response to treatment be evaluated?

• If this were your own child, what would you do and why?

• Could I speak with parents of children who have completed this treatment plan?

• Are there any resources or websites you recommend for more information?

• Who should I talk to about my health insurance and payment issues?

About the doctors

• Which specific doctors at this center will treat my child? Which doctor is primarily responsible for my child’s care?

• Who will perform my child’s surgeries?

• How many patients have your treated with my child’s diagnosis?

• Have you published any studies about this treatment?

About home care

• How do I handle home healthcare?

• Is my child at special risk for infection?

• How can I protect my child against infection?

• What should I do if my child has a fever?

• Are there any support groups in my area?